Willow began having unexplained rashes on her body at just two months of age. Concerned about the initial rash on Willow’s belly, parents Natalie and James decided to take her to the pediatrician. The nurse practitioner diagnosed the rash as a mix of hormonal bumps, a common occurrence associated with breastmilk, and heat rash. She prescribed Willow a topical cream, but about a week later, the bumps began to spread.
Another visit to the pediatrician lead to an eczema diagnosis, yet the new creams did nothing to slow the spread of the rash. Now covering her belly, back, parts of her face, the family headed back to the pediatrician once more. The doctor was at a loss and sent Willow to a dermatologist, who also believed Willow had a severe case of eczema. They ordered a biopsy just to be sure, but the results simply affirmed the doctor’s initial diagnosis of eczema.
Countless creams, lotions, and detergents later, the rashes continued to worsen, and Willow developed bright red bumps around her groin and a thick crust over her scalp. Finally, mom Natalie had enough — Willow was in pain and her rashes looked nothing like eczema, so she demanded another biopsy. This time, they received a completely different diagnosis: Langerhans Cells Histiocytosis (LCH). LCH is a rare disorder in which excess immune system cells, called Langerhans cells, build up in the body.
LCH can affect the skin or the bones — initially, tests revealed that Willow’s LCH only resided in her skin. But as time passed, the oncologist discovered that the LCH had spread and formed two bone lesions on the back of her head. As doctors prepped Willow for surgery, blood work revealed that she had low hemoglobin and would need a blood transfusion. They also discovered signs that LCH could also be in her bone marrow. Willow’s chemo port was placed the very next week and she began her chemo treatments the same day. She also had a bone marrow aspiration during the surgery.
Willow’s treatment plan consisted of chemo once a week for six weeks, followed by a strong dose of oral steroids. At the end of those six weeks, a CT scan revealed little progress so the treatment regimen was repeated. Finally, the family received news that Willow was able to move to the next phase of treatment: maintenance. Chemo would occur once every three weeks, followed by a five-day course of steroids.
Then, the family faced yet another roadblock. The bone lesion had returned, so another round of chemo was scheduled. Following this treatment, the bone “knot” did not improve, and so the oncologist switched her to a stronger, harsher form of chemo and steroids.
“This journey has been an emotional roller coaster, a finical burden, an all-around life-changing event,” said Willow’s family. “It can be physically draining.” Today, Willow is coping with the side effects of LCH and her treatment. Her speech and physical abilities have been delayed, and she’s currently receiving therapy for both.